To Zac on school enrolment day!

To Zac,

I can’t believe this day is here, time to enrole you for school. This is another milestone in your story, another step forward, it’s a day we weren’t sure we’d be seeing and so it was with a heart full of emotion that I handed in your forms.

The teachers are all excited, Caleb’s little brother will be joining him at the big school. They have been making preparations for you already – the new building will be fully accessible, there’s new equipment & plans are in place to make sure you have all you need. You are excited – you’ve been saying for the last few months that you can’t wait to be at school beside your brother. At 4 years old you are more than ready for school – you are a master at communicating, you love stories and arts & crafts, you love to be around people & you are ready to learn new things. The teachers are getting ready for you, you are ready, the truth is it’s me that’s not ready.

I’m not ready for this new chapter, I don’t think I’ll ever be ready to let you go off into the world of school but this is a miracle milestone and you are far too smart & clever to be at home all day!! I will worry, I will probably shed tears, I will have sleepless nights, I will wonder what you’re up to, I will wonder if you’ve had your medicines and your feeds, I will be thinking about you & if you’re comfortable, if you’re managing your work. I will be waiting incase the phone rings and I will be a bit lost without you in the house in the afternoons.

But I know you need this new milestone – at 4 years old you are already wondering what you will be as a grown up. You keep asking me if you’ll work in an office like daddy, if you’ll write stories, if you’ll be on tv and you always say “I just can’t decide mummy”. Well here’s what I think; I think you are totally awesome, I think you are funny, I think you are brave and determined, I think you have a fighting spirit, I think you always know the right words to say, I think you are a genius and I think school will give you so much opportunities & experiences that you can be anything you want to be.

So that’s it, you are now enrolled. We’re well on our way to you becoming a big school boy. I couldn’t be more proud of you and all you have achieved so far. For the next few months tho, I’ll enjoy our afternoons and your endless funny chatter because my heart has a few more months to get ready for this next chapter in your story. πŸ’™

It’s raining cats and dogs!!Autism and literal thinking.

“Mummy what does that actually mean?” I hear this numerous times a day as Caleb tries to process something I’ve said or something he’s heard. That’s because people with autism have difficulties in understanding verbal and non-verbal communication.

Most of the language we use is actually non-verbal; we use facial expressions, hand gestures, tone of voice and when we do talk we tend to use a lot of figures of speech (phrases that have a different meaning to its literal definition). This, along with some other processing differences can make it very tricky for someone with autism to communicate effectively. Caleb, as someone on the autistic spectrum, can find it hard to see the unseen bits of information that go on around us all day. It is difficult for him to think what others are thinking and the information he sees is literal – it’s difficult to match that information up with a persons feelings. It’s also tricky to see the big picture – someone with autism will process little bits of information at a time and they will often miss clues that lead to the bigger picture. While these processing differences can also be strengths; someone with autism will often see tiny details, they may be able to solve problems/projects with small detail, it can also make every day communication a challenge.

Here are some funny examples of literal thinking that we’ve experienced with Caleb over the last few months:

  • The Christmas song “Santa baby” – Caleb hated this song over Christmas and he would constantly say “why are they singing Santa baby? Santa is very old, he is not a baby”.
  • When watching “toy story” one of the characters said “it’s raining cats & dogs”. Caleb asked me what that meant because rain is water and he couldn’t see any cats or dogs in the rain on the film.
  • “It’s freezing outside” – no mummy it’s 3 degrees. If it was freezing it would be zero degrees or below so really it’s just cold.
  • When playing a board game I told Caleb to turn the timer round. The 10 second timer was taking ages, I looked at Caleb – he was turning the timer round & round in his hands instead of turning it upside down like I’d expected he’d do!
  • When baking I asked if Caleb wanted to lick the bowl. Yep he actually took the bowl, stuck his face in & started licking the sides. Well I didn’t ask if he wanted a spoon to scoop the cake mix I just said “lick the bowl”.
  • On coming home from school one day Caleb heard a class mate say a rude word. I explained the word was very bad and that I didn’t want him to use it or call anyone that name. A few days later I heard him repeat the word while playing action figures. He was playing a baddie – “but mum you said it was a very bad word so baddies must say it??”

These are just a few funny examples that we’ve encountered but you can see how confusing it must be for someone with autism to work out every day what people are actually meaning and what people are actually expecting of them. In our house we always have to think before we just say an instruction and if Caleb doesn’t come back actually wearing his jacket then I know he’s taken my instruction “find your jacket” quite literally! “I did find my jacket, it’s on my bedroom floor” well I didn’t ask him to put it on or bring it downstairs did I?!!

The blur that was 2019!!

Happy new year from a different kind of normal!!! 2019 seems to have gone by in a blur for us and our life seems to be lived in a constant whirlwind as we raise our two crazy boys!! Here’s a few highs, lows & memorable moments from the last year:

Our little Zac has kept in the best health he’s ever had over this year – we have now managed our record of a full year with zero hospital admissions!! This is a miracle for us and although there have been a few periods of illness and worry, we have managed Zac’s care at home without the need for additional breathing support. Zac continues to receive his miracle medicine and we are seeing him gain strength as a result of his treatment and his daily physio exercises. He even took part in a few news reports about his medicine!! Zac manages nursery 5 mornings a week and is making great progress. He is included in every aspect of nursery and this year has enjoyed sports day, teddy bears picnic and a trip to the library. We have also welcomed “chas at home” into our house which gives us a little break every few months. Zac always gets up to lots of fun activities with his “chas ladies” and is well looked after while me & Craig can have a meal out or spend time with Caleb. 2019 saw Zac’s “make a wish” granted where he received a spa pool to do hydrotherapy at home. With the support of our amazing family & friends we were able to build a superhero hut to house his pool & build a changing area too. Over this next year we are planning to build a wet room and install a lift in our home so that all Zac’s care needs will be met. 2020 also looks to be the beginning of some discussions around spinal surgery for Zac – unfortunately, as Zac grows his spinal curve seems to be getting larger and altho we do all we can to prevent this it seems that surgery may be inevitable. Early in the new year, Zac will attend some clinics where his medical team will do various tests & assessments and some difficult discussions will be had. Zac faces challenges daily but he continues to do so with an incredible sense of humour, a smile on his face & a brilliant attitude!! Couldn’t be more proud of the little guy he is.

2019 saw us receive an official autism diagnosis for Caleb and again it was a long process with many months of meetings, assessments and appointments. Caleb has coped with many different situations over the year and he continues to amaze us with his academic ability, the quirky way he sees things and his insight into the different way his mind works. I took part in an autism course and it proved very beneficial in helping us understand certain things Caleb goes thru in every day life. We have learned to chose our battles this year and have some strategies that work for Caleb. He is learning to adapt and cope with a lot altho meltdowns are still a common occurrence in our house. For a few months this year, Caleb was part of a sibling support scheme ran by chas. He had a volunteer who would spend some time with him each week doing all the activities that he loved – this was amazing for Caleb and he loved having “his grown up” that was just there for him!! Caleb has celebrated many achievements at school during 2019 and also helped build Zac’s superhero hut. He continues to be his quirky self and is completely bonkers – couldn’t be more proud of the boy he is.

In May of 2019 me & Craig celebrated 11 years of marriage – we continue to work as a team through it all and our two boys have definitely made us stronger. I stay home with the boys while Craig works full time – we are very blessed to be able to work like this. As a family this year we’ve had a summer holiday, movie nights, trips to the park, days out, walks, weekend breaks at Rachel house, we’ve spent time as a family and made memories.

We are so thankful to everyone who supports us and follows our journey. We wish you all lots of happiness for 2020!! Xxx